The joint pain that made her life miserable after winning the world dance competition: What you need to know about Ankylosing Spondylitis (AS)

Do you often have back and joint pain? Do you feel stiff and uncomfortable when you get out of bed in the morning? You might think that this is a normal thing that comes with fatigue and aging. But not all pain is normal. Today we are talking about such a story. This is the story of Alicia Graff Mack, a world-renowned dancer. This is about a disease that affected her dancing career so much that it stopped her, but in the end it strengthened her.

'I trained like an Olympian, but the pain didn't go away'

Alicia was about 10 years old when doctors first had to drain fluid from her knee. Since then, she has suffered from pain for more than a decade, undergone numerous surgeries, and had her precious time as a professional dancer stolen. It took a while to figure out exactly what caused it all. The disease is Ankylosing Spondylitis (AS) . Simply put, it is an arthritis condition that occurs when our body’s immune system attacks our joints.

Some days her knees would swell up as much as a lemon. She couldn't even walk properly. She couldn't even imagine dancing in the special shoes she used for dancing.

There were countless times she thought, "I'll never be a dancer again."

When she was young, training as a talented dancer, she didn't pay much attention to these symptoms. As she says, "I trained like an Olympian. So it's normal to have aches and pains. That's what happens to most dancers all the time."

But her symptoms gradually worsened. Even after surgery for a small tear in the cartilage in her knee and physical therapy, the pain did not subside. She could not even walk to the subway station to get treatment.

"For about six months after the surgery, no one could give me an answer. My entire life's dream had been based on the health of my body. I was really at the bottom of my life," she says.

What exactly is Ankylosing Spondylitis (AS)?

Okay, let's see what this condition called AS is. It's an autoimmune disease . That is, the system that protects our body from disease mistakenly starts attacking our own healthy cells, especially the joints.

AS mainly affects the joints of the spine. This is why there is stiffness and pain in the back in the morning. Over time, these joints can become compressed and the spine can lose its flexibility. But it is not limited to the spine. It can also affect other joints in the body, such as the knees, hips, and ankles. This is what happened to Alicia.

One reason why this disease is difficult to diagnose is that the early symptoms are very similar to normal body aches.

Life took a different path, but I didn't give up on my dream.

As her dancing dreams faded, Alicia began to think about a different life. She enrolled in university with the intention of pursuing a career in arts administration. In the meantime, she continued to receive physiotherapy and medication. Gradually, her body became stronger. By her final year of university, she was able to return to dance classes, purely for her own enjoyment.

While she was looking for a job at a good company after graduation, she had one summer off. She approached a famous dance company in New York, hoping to get a job in the administration or marketing department.

But the founders of that group had other ideas. "We heard you're dancing again. We have a tour in Italy, and one of our dancers has had an accident. Can you join us again?"

Alicia was scared at first. It had been a long time since she had danced full-time and performed in concerts. But this might be her last chance. "I thought, 'I'm going to be sitting at a desk for the rest of my life. I want to do this before then.'"

She took advantage of that opportunity and returned to the dance floor.

The correct diagnosis of an eye problem

Over time, Alicia's vision began to blur, her eyes became red and painful. This was the first sign that she had AS.

Her eyes had developed a condition called uveitis , an inflammation of the eye. Her rheumatologist explained that uveitis is a common condition in people with AS. This was the only way to confirm that her condition was AS, not reactive arthritis.

With the correct diagnosis, she began treatment that was right for her. She started taking a disease-modifying antirheumatic drug (DMARD) like Adalimumab (Humira) . But new challenges came with it. “I had to travel from country to country with injection syringes. Keeping them cold on 18-hour flights, checking to see if the hotels I stayed in had refrigerators, and getting the medication to the hotel on time… it was a dance in itself!” she says with a laugh.

With the right treatment, she was able to dance professionally for another 5-6 years. "It was a blessing I never expected," she says. Today, she is the head and director of the dance department at the world-renowned Juilliard School.

"I still take Humira, and when the disease flares up, I take a round of medication like prednisone," she says. "Most days my back and hips are really stiff. But I'm staying as active as I can."

Ankylosing Spondylitis, AS, Joint Pain, Back Pain, Arthritis, Immune System, Uveitis